The morning was off to another rocky start, coughing followed by vomiting and then on to my appointment for a Synagis shot. At least I slept pretty good last night!
At the doctor's office I weighed in at 18 lbs 3 ozs naked - so at least being sick hasn't stopped my progress in the weight department. The shot was over quickly and I was back to being in a pretty good mood. Throughout the day I played for a little while but would wear out quickly and take long naps. When Mommy came to relieve Lucille at 4, I sounded really dry so Mommy did some suctioning which caused coughing which you guessed it - caused vomiting. Not too much though as Mommy had Lucille slow down my feeds to a crawl today. I played in the afternoon until Daddy came home. At 6 before I could fall asleep, my parents quickly changed my trach. Then it was time for my breathing treatment and I fell asleep in Daddy's arms - maybe because I like the white noise - but probably because it was nice to have Daddy hold me. After a 30 minute nap I was wide awake and crazy happy! I played in my crib for the next 3 HOURS!!!! It certainly seemed like I was having some side effect from either the breathing treaments or the Tylenol with Codeine because I was all over that crib. In fact, Daddy caught me playing peek a boo - with myself! I finally wore myself down after Marianne arrived and fell asleep but not before Daddy had to change out my bedding and my clothes when my feeding tube became disconnected due to all the activity.
Because I am still so sick, it was not surprising to my parents that Shriner's has decided to cancel my hand surgery. They also are rescheduling my scoliosis appointment for tomorrow so I don't get other kids sick in clinic. My parents are disappointed but would rather I recover since surgery takes so much out of me. Unfortunately, Dr James is now booked out until May. Since my hand surgery would need to be done in two stages and both require 4-6 weeks in a cast it is unlikely I could get both surgeries completed before decannulation this summer. If I do get decannulated, Shriner's may not want to do any more surgeries on me for a few years as my small airway would make me a bit risky for anesthesia. My parents figure there must be some reason this is all happening and everything will work out in the end - but this cold is sure playing havoc with all the time tables they had been trying to work with. In the end, my parents are just happy I am home and recovering a little each day.
Peyton Nicole Smith